Anyone entering on this journey should be under no illusion, its very very tough.  Alice needs to be taught speech and language one step at a time.  Being determind and logical people we have chosen to follow an AV approach. 

For the uninitiated, AV is Auditory Verbal therapy.  In essence, AV believes that parents (or carers) of the hearing impaired child are the primary therapist.  The AV therapist merely directs and shows the family the techniques for achievment.  think of it like a rugby team with coaches and players.  the rugby analogy seems to work better given the amount of time you’ll spend grinding out a result.  every metre is hard fought. 

Anyway, AV’s other main ideology is that Alice needs to learn to listen, (of course you all say) but here’s the rub.  Given she has spent 2 years not listening, we have to draw her attention to sounds and then stop giving her the other clues we all take for granted in speech.  That means no signing, no gestures and no lip reading. If she is to gain the most from her CI, she needs to develop an “auditory feedback loop”.  In plain English, this means I hear it, I say it, I think about what I can hear myself saying and then I improve it.  Alice should start to regulate her own speech and improve on what she hears.  This is a skill that hearing children do naturally, Alice needs to switch on her concentration to her ears alone. 

This is tough, Alice is an excellent lip reader, she mouths so many words, but take away our lip patterns to copy and she’s not as good.  She doesn’t like that (Daddy on the video below is distracting her by pointing at the jigsaw, to stop her lip reading), but every day we practice.  Alice is becoming good at connect 4 as every time she gets a sound right she can put another piece on the board, have a grape, get a sticker or whatever the latest game is. 

AV is all about lifestyle.  You shouldn’t leave a room without telling Alice where you are going, Alice has everything around her explained constantly and she is surrounded by the most annoying parents in the world.  We forget sometimes and talk to the rest of the world in the same way (and thereby look slightly mad). 

Aside from all the  therapy, she is growing up.  She’s down to start nursery in September, a huge leap of faith for both us and her new teachers.  Her teachers have no specific expereience of deaf children and certainly not of CI’s, so its a huge learning curve.  However, this is where her TOD comes into her own, with training days and specific Q&A sessions for the staff and the special needs team.  We have been overwhelmed by the positive response so far and pray that she will cope.  Alice can stay at the same school until she is 18, so we hope that she likes it.

The hard work continues and if you see a mad man in the supermarket, showing his beautiful daughter the milk and repeating himself a hundred times, stop and wonder why, chances are he’s doing his best to give her a most wonderful gift.

Alice has now been back for 2 sets of mapping since switch on.  We went back the following day to add increasing programmes to her map.  Essentially the game is to expand the distance between Alice’s threshold and comfort levels, thereby essentially increasing her access to all sounds and frequencies.  This involves incrementally increasing her map and thereby increasing the sounds she should be able to hear.  So we have spent the last couple of weeks keeping the implant on her head and gradually jumping her up. 

Keeping the implant on is easier said than done, we have the choice between a huggie or a snugfit.  Snugfit is essentially a plastic casing for the behind the ear (BTE) bit, that has plastic wrapped wire to fold round the front of her ear.  As Grandma will agree, this usually involved squishing Alice’s ear into an awful shape to keep it on.  When I snapped it after only 10 days, we looked at the alternative.  Huggies – these are essentially a plastic stretchy cord that comes down round the front of Alice’s ear hugging the BTE to her ear. Its smaller and neater and seems to stay on better.

Getting her to wear it can be a moment of stubbornness, Alice is very stubborn about many things (order in her universe is very important).  However a threat of going into her cot or a stern word from Daddy and she complies.  Thereafter she happily wears it all day, often pointing out if its fallen off or switched off for some reason. 

Therapy starts again, its all about encouraging discrimination of sounds and we have been introduced to the Ling sounds (essentially, oo, aah, sh, ee, sss, mmm) which show the therapist that Alice can hear all the speech frequencies.  We now look sillier than ever, every time a plane goes past, its aaaaaaaaaaaah,  Alice responds with her sign for plane and we smile full of hope. 

“uma” and “mu” are Alice’s 2 words, the first is very definitely mummy, the second is mouse, Mrs Mouse